Holding Pattern vs. Crash Landing

Standard

I feel like an airplane circling the airport in a holding pattern with my treatment plan for RA and I’m running out of fuel, threatening to crash land.

Last month I shared my hopes and my struggles with the new JAX inhibitor, Xeljanz. This month, I have to say that Xeljanz is going to be pitched to the failed medication pile. The side effects being caused by Xeljanz are greater than the benefit: abdominal pain, bloating, severe constipation, rise in CRP over baseline, side effect of high cholesterol levels that have landed me on Lipitor therapy when cholesterol was not an issue earlier, increased liver enzymes, decreased renal function, return of flares.  Honestly, at this point, I don’t know what I’m going to do about my therapy for my autoimmune diseases or if I even want to continue to see a Rheumatologist or try a different therapy for S-RA.

  1. My current insurance policy through the state of Oklahoma for people with pre-existing conditions  is ending December 31st because it doesn’t meat the requirements of ObamaCare. I only need three months of insurance in the coming year because I qualify for Medicare coverage on April 1, 2014. I didn’t even make enough money in 2013 to have to file a tax return so I don’t know how all the Marketplace Exchange debacle is going to work out. I may qualify for an exemption since I don’t have to file a tax return. I do know I absolutely have to have some type of coverage. Medical care is my greatest expenditure. Thanks to healthcare.gov being down all that is up in the air. I can’t even schedule doctor visits after Dec 31st because I don’t know if I’ll have insurance!
  2. I dislike my new Rheumatologist. I’ve now seen her for 5 visits and she can’t remember what she has told me from visit to visit. I was torn between screaming or crying last visit. I felt like I was in candid camera skit of “who’s on first”.  Me: How were my cholesterol levels? Her: Why are you concerned about your cholesterol levels? Me: Because they were elevated on my four month labs post therapy results and I’m concerned about having to stop Xeljanz. Her: Who told you that you’d have to stop Xeljanz because of cholesterol levels. Me: You did during my last visit. You told me that you’d need to get another lipid panel because if my cholesterol levels rose any higher I wouldn’t be able to stay on therapy. Her: I don’t know why I’d say that because we would just treat the cholesterol with medication. Me: We have. You asked me to call my PCP and ask him to start me on Lipitor. I’ve been taking it for the last four weeks. Her: Well, I didn’t get a lipid panel with your last labs. We will catch it on your labs in late November. Me: What was my CRP? Her: 7.3, that’s good. Me: It’s greater than the baseline level we took before I started therapy. Her: It’s not a bad level. Me: It’s the highest CRP I’ve ever had. I am sero-negative. Her: Well, it could go back down. We will check it in Nov too. Do you have any other concerns? Me: Yes, my left shoulder has really been hurting and is so stiff I’ve lost range of motion. Could you inject it? Her: Have you tried physical therapy on it? Me: Yes, after my first appointment with you  ordered physical therapy  and it was discontinued. Her: Who discontinued it? Me: You did because I flared so bad you had to give me low doses of Prednisone to get the flare under control.  Her: Oh, I see. Have you even had a joint injected before? Me: Yes, you injected my hand on my 2nd visit.  “““““silently screaming in my head to run like hell “““““` I don’t want to see her again.
  3. I’m taking myself off the Xeljanz. Over the last two weeks I’ve had abdominal pain, fever, bloating, and severe constipation. I tried to tell my Rheumatologist about these side effects and she said that Xeljanz doesn’t have the side effect of abdominal pain or constipation; however, she made me sign a informed consent form prior to starting Xeljanz that I would notify her of any changes in bowel habits because of the potential for gastrointestinal tears on this medication. The printed warning insert that comes with Xeljanz treats these symptoms as a serious side effect of drug therapy.  I’m seeing my PCP Friday to see what he would like to do moving forward with my care whether it is a referral to a new rheumatologist or if he wants to manage my care until I qualify for Medicare benefits April 1st.

I feel defeated. The pile of failed medication treatments are too numerous to ignore. The fact of the matter is that I will never be in remission because I’m missing the cornerstone treatments of predisone and methotrexate. No DMARD is going to work on it’s own without these other cornerstone treatments. My endocrinologist asked me during my last appointment if I’d just consider managing my pain and let these other therapies that are wrecking my body go (Xeljanz). I have to say at first I was offended, but in recent days it makes more and more sense. I’m a fighter and it’s hard to lay down my sword, but I’m weary of fighting. Maybe it’s time to admit defeat and just mange the symptoms and accept whatever quality of life I have now.

Yep, I’m in a holding pattern. Should I just go in for a crash landing or call the tower for a solution?  I don’t know what the answer is to that question tonight.

 

Advertisements

About Mischelle Jackson

I am a middle aged, single lady living with Rheumatoid Arthritis and other chronic illness which have led me into early retirement from a nursing career. I have a fur-baby, Jaycee, a Chihuahua, who makes me laugh and helps me get out of myself when I'm having a bad day. I crochet for relaxation when the RA allows. My faith sustains me.

5 responses »

  1. Hi Mischelle. I read your post with keen interest, compassion, and admiration. What I want to remind you (and me) is that we are WINNING !! It is sad as hell to have to be the captains of our own ship with excellent memories and detailed medical records when we’re so ill – BUT – it is what it is !!! YOU are phenomenal !! Your ability to manage your care is outstanding and shows your tremendous organizational skills, keen mind, and patience : ))) I understand the drug therapy risk:benefit problem and how poor the drugs are at treating our disease, in many cases. I couldn’t tolerate MTX and am actually glad because I no longer have to deal with the horrible brain fog. Humira was associated with a near-death upper respiratory infection landing me in hospital for 7 days. I’m now only on prednisone, minocycline, plaquenil, and stuff for pain. I don’t know if you know that Orencia can be taken without MTX and there are reasonable statistics on ACR20 / 50 / 70 improvements using it as monotherapy. Just want to encourage you, even though remission is likely not in sight – low disease activity may be possible. I don’t know why you think prednisone and MTX are the cornerstones for remission. I used to be a researcher before RA ended my professional care so I do try and keep up with the literature when well enough. Sounds like you do, too. Please know you’re not alone !! The posts you write and information you share matters. One of my favorite places to share with other RA-ers is Daily Strength, Rheumatoid Arthritis group. Come on over if you’re so inclined.

  2. I can relate to what your are saying, Mischelle, although you have been thru more biologics than I have. I don’t blame you at all for stopping Xeljanz. You are having serious side effects, and you certainly do no need an abdominal tear on top of everything else. I hope your GP is able to give solid, good advice and help you. Hugs.

  3. Thank you for your input on my blog entry. I should make a good informed decision after seeing my Internal Medicine doctor Friday. Mary, I’ve had three physicians tell me that the “cornerstone” treatment plan for RA is a steriod, MTX, and a DMARD. Those who cannot take some combination of these rarely reach remission. I appreciate the encouragement and support offered by you both. 🙂

  4. Hi Mischelle,

    I found your post on Brain Fog while searching online. I appreciate your ability to not only to share your experiences, insights, struggles, and questions, and knowledge- but to articulate them so well.

    I’m a 45 year old single professional who is 3 years post diagnosis. I was moving along quite well on Methotrexate – until my fingers started locking up last month! I realize that I need to amp up my treatment. I am just starting to explore the biologics, looking to converse with my Rheumy on Wednesday.

    I will pray for wisdom and successful treatment plans and continue to pray for a cure for all of us!

    • Good luck to you as you journey into the world of biological agents. The best advice I can give anyone starting biological agents is to make sure your expectations and treatment goals are matched by your physician. GBY!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s